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Welcome to issue 4 of Butterfly News. We now have well over 200
subscribers!
Summer has arrived early here in the North West of
England, although it probably won't last! Don't forget to apply
your sunscreen whenever you are outdoors, even if it is cloudy!
Shar Phoenix has again written the article for this issue, and I'd
like to say a big thank you to Shar for providing the articles for
Butterfly News.
IN THIS ISSUE
* The Diagnostic Dilemma
* Correction to Butterfly News Issue 3
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The Diagnostic Dilemma
Often, long before we know we have Lupus, we're aware
that something unusual and unpleasant is happening within our bodies.
But the process of diagnosis can be so long and frustrating that
we may fear we'll never get an accurate answer and unfortunately,
sometimes we don't. If you keep a journal, please be sure to share
it with your doctor, having him or her enter the information you
offer into your medical record, in your presence. Then, in your
journal and in front of the doctor, note the date and time that
he/she has entered that information into your record. This is often
the only way we can be sure that our input will be saved.
Without such precautions, our doctors may fail to
consider our symptoms as valid disease indicators, prolonging our
ordeal and depriving us of medical services which could ease our
pain and other symptoms. Journals are such effective health monitoring
tools that presiding judges can accept them as evidence in claims
for U.S. Social Security insurance. Our journals validate our experience;
they're powerful tools in our struggle to arrive at diagnosis and
to retain that diagnosis, no matter whether our doctors or their
opinions may change.
Often, we're told that our symptoms do not indicate
Lupus, simply because they don't fit a particular doctor's definition
of SLE. Some doctors are so convinced that they're correct that
they won't even consider our symptoms, do a physical or run blood
tests. If insurance payment of our medical bills hinges on diagnosis,
our coverage may be disallowed, making our already challenging lives
more difficult. Then, when we connect to the internet and the worldwide
Lupus Community, meeting more people with SLE, we find that our
symptoms are common to many Lupies including some who've been met
with the same damaging response.
Despite numerous qualifying symptoms and persistent
effort, many people struggle for years without diagnosis and proper
treatment. If they do have untreated SLE, pain and physical damage
may increase as the disease progresses and some will be more likely
to develop multi-organ involvement. If their SLE continues unabated,
some will die, of unverified symptoms, some by intensely pain-driven
suicide, having been denied the diagnosis and care that could have
spared them. If some actually don't have SLE but have a related
syndrome, accurate diagnosis is just as urgent. No one should be
abandoned to wander the medical wilderness without answers, in pain
and alone.
Granted, we must rely on proficient medical researchers
to crack the Lupus code but if we accept compliant co-dependent
relationships with our doctors, we effectively surrender our will.
To protect ourselves during the diagnostic dilemma it's to our benefit
to learn the base criteria for SLE diagnosis, the types of tests
involved, their reliability and implications.
There is a base of eleven established criteria for
SLE, which include photosensitivity, discoid rash, malar (otherwise
known as the "butterfly" rash which appears across the face), arthritis
and it's accompanying joint swelling, changes in blood chemistry,
immunological changes, inflammation of the heart or lungs, mouth
sores, neurological problems, kidney problems and abnormal titre
of antinuclear antibody (ANA). In the antinuclear antibody test,
titers represent a scale of values which are assumed to be positive
in up to 98% of SLE, at least at some times of testing. The pattern
most accepted as common in SLE is "speckled" with elevated titre.
Sometimes our doctors may have the ANA test redone using a different
technique. Specific antibodies may be tested, such as the antiphospholipid
antibodies, which may increase the risk of blood clots or strokes.
Doctors can also do skin biopsies comparing an individual's rashes
and normal skin. These biopsies are said to diagnose SLE in about
75 % of cases.
There are several tests used in diagnosing SLE including
the Anti-DNA test, the anti-Sm antibody test, the anti-RNP antibody
test, the anti-Ro antibody test, and tests measuring serum complement
levels. But because the ANA test is the most routine and is the
test which so often is used to deny diagnosis of SLE. it is the
focus of this article. For further information on testing and other
diagnostic aspects in SLE, please check out the links included later
in the article.
Primarily, it's important to remember that only any
four of the eleven established criteria are required for a positive
diagnosis of SLE and blood tests need not be the strictest qualifiers.
Yet many doctors still rely most heavily on the ANA test. If an
individual does show positive ANA results, the presence of only
a couple of other factors are necessary for accurate diagnosis.
There are many doctors who believe that one negative
ANA test result means someone absolutely does not have SLE, with
the only exceptions in cases of heavy or prolonged use of steriods
such as Prednisone or recent chemotherapy. While these are reputable
exceptions, the ANA test is notorious in the Lupus Community for
false negatives in SLE and has been for many years. Specifically,
many people with several physical SLE symptoms can have alternating
negative and positive results on the ANA test throughout their lives.
Others who've had several active SLE symptoms for years have never
had a positive ANA result even when most or all other criteria are
obvious during testing. There are experienced doctors who readily
admit these facts.
When the ANA test is negative but other symptoms indicate
SLE, the LE test may provide an accurate result. This test is considered
to come up as positive in 90% of us with SLE, if done repeatedly,
at least eventually. It's said to be positive aproximately 20% of
the time in Scleroderma, Rheumatoid Arthritis, Mixed Connective
Tissue Disease, in liver disease, and in people taking medications
such as chlorpromazine, isoniazid, procainamide or hydralazine.The
LE test may indicate SLE in the abdomen, spine, heart or lungs.
It may show a false positive in Lupoid Hepatitis or may appear negative
during steroid therapy or during remission. Unfortunately, since
the LE cell test is not specific for SLE, it's rarely used nowdays.
All things considered, Lupus is far too complex and
multi-symptomatic a disease for one test to establish criteria absolutely.
Those doctors who are most beneficial in diagnosis and treatment
are those who are up to date on Lupus research. They'll be experienced
in SLE diagnositc tests and their idiosyncrasies and able to knowledgeably
analyze symptoms and medical history. Equally important, they'll
interact respectfully with the individuals who employ their services,
realizing that the inhabitants of the bodies they treat have expert
knowledge in their own right. In seeking diagnosis, the best trained
doctors are likely to be rheumatologists or clinical immunologists
but if questions are unresolved or complications develop, it's wise
to seek another opinion. Which type of specialist to consult will
depend on the specific problem. For example, a nephrologist would
be best for a kidney problem, an opthamologist for a vision problem
or a dermatologist for a skin problem.
National Jewish Medical and Research Center has been
rated among the top 10 independent biomedical research institutions
of any kind in the world by The Institute for Science and Medicine
and as the only one that also provides patient care. NJMRC was ranked
as one of the three most influential research institutions for immunology
and as the number one private immunology research institution in
the world. Their website with current information on respiratory/immunologic
diseases and treatment is at: http://nationaljewish.org/main.html
Information on SLE symptoms, laboratory tests, treatments and diagnosis
is at: http://www.nationaljewish.org/medfacts/systemic.html The
Worldwide Lupus Links website at: http://www.puffin.fsnet.co.uk/worldwid.html
has many useful links to guide you through this process and two
fine pages, "Gathering Evidence for a Diagnosis" at: http://www.puffin.fsnet.co.uk/rheumy1.html
The previous two articles, "Self-Advocacy for Optimum
Healthcare", "Our Right to Pain Relief" and this article are part
of a continuing series. This series is meant to assist in creating
tools that can help to equalize the balance of power between us
and the medical professionals involved in our healthcare. Knowledge
truly is power, especially when shared. Our best hope of achieving
fast, accurate diagnosis and optimum care is to recognize that,
if we wish to survive and even thrive, in spite of Lupus, we'll
do well to assume responsiblity for our lives, exercising that responsibility
assertively and wisely. The ultimate difference between victor and
victim is that those who value their lives learn to cherish and
protect them.
This information, offered as food for constructive
thought, is the product of research and the contributed experiences
of individuals with SLE; members of the Yahoo Club, "Living With
Lupus". http://clubs.yahoo.com/clubs/livingwithlupus The positive
support and encouragement of friends within the Lupus Community
can do so much to aid us in living longer and living well. By connecting
closely in the Lupus Community, sharing our experiences, our research
and multiplying the power of one, we can help to change the future
of Lupus.
This article was researched, written and copyrighted
2001 by Shar Phoenix
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CORRECTION
Correction: The following line was accidentally cut
from from the 2nd paragraph of "Our Right to Pain Relief" in the
3rd issue of The Butterfly News. "The Joint Commission On Accredidation
of Healthcare Organizations signed this act last year & gave doctors,
etc. one year to voluntarily comply. "( In context, that would be
clear as, act signed 1/1/2000 and in effect from 1/1/2001)
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